Meet Krissy Kobata: You Could Save Her Life

Krissy Kobata is dying—not that you would know it by looking at her. She loves hot yoga, prides herself on a healthy diet and works at a swank Los Angeles advertising firm. But in 2008, she learned that she has myelodysplastic syndrome, or MDS, a disease that destroys the body’s ability to make new blood cells and often develops into acute leukemia. There is a possible cure: a bone marrow transplant. Yet that common procedure is frustratingly out of reach for Krissy. As the daughter of a Japanese American father and Caucasian mother, she hasn’t been able to find a donor—not one of the 9.5 million volunteers in the national bone marrow registry is a match.

And Krissy’s not alone. Mixed-race patients have a harder time than others finding matches for transplants, and as the number of multiracial Americans explodes, increasing by a whopping one third in just the past decade, the problem has become acute. Now Krissy is recruiting more volunteers—at least 4,000 to date—in an effort to find just one who can cure her before her MDS turns deadly.

Could that one be you? Krissy wakes up every day hoping you’ll take the steps to find out. Amazingly upbeat, she shares her story exclusively with Glamour.

KRISSY KOBATA: It hit 80 degrees in February one Saturday in 2008, and I’d gone to the beach in Santa Monica with my brother, Randy. I was 25, and I remember sitting there on my towel in a purple sundress when he looked over at me and said, “Eeew, your legs are so bruised! That’s wrong.” I was kind of irritated because I felt fine. I reminded him that I’ve always bruised easily.

But Randy really thought I ought to get checked out. So I made an appointment with my internist. After he’d done a quick blood draw, I could tell by the look on his face that something wasn’t right. He ordered three more tests and then sent me to a hematologist at the University of California, Los Angeles, who had me get a bone marrow biopsy—not the most pleasant thing if you’re awake for it. They have to insert a syringe into your hip bone and draw out marrow. Thankfully the excruciating part only lasts about five seconds.

I was at work on April 11, 2008, when I received a call from my dad. The hematologist, he said, wanted me to come in for the results and bring the whole family, including my brother. Immediately, my stomach sank. It was bad enough that the doctor wanted my parents there, but my big brother too? When I hung up, I called my best friend, Shannon, and we both cried. Four days later, my family and I went to UCLA and sat in a room looking at the photos of penguins on the wall, trying not to imagine all the awful things we were about to hear. When my doctor entered, he started talking. I’m sure I only heard every fourth word or so.

KRISSY’S HEMATOLOGIST, MICHAEL ROSOVE, M.D., clinical professor of medicine, hematology-oncology, at UCLA: I told Krissy she had MDS and that her bone marrow was underproducing normal blood cells. If your bone marrow fails, that can be life threatening.

KRISSY: I’m pretty sure my response was, “Um, what?” Before that day, I didn’t even know what bone marrow did or was—only that it’s considered a delicacy in many fancy restaurants.

DR. ROSOVE: I also told her that MDS can turn into acute leukemia.

KRISSY: Leukemia. That word I knew.

A Possible Cure

Dr. Rosove explained that a bone marrow transplant could save Krissy’s life. The body’s factory for making new blood cells, bone marrow can be transplanted from one person to another. But the tissue type must be nearly identical; if not, the new cells could attack the recipient’s body so forcefully, she could die. And while it’s possible any donor could be a match for any recipient, it’s highly unlikely unless they both have similar heritage. Caucasians have almost a 93 percent chance of finding the right match, but for someone like Krissy, the odds are shockingly low.

Krissy’s family got a crash course in all of this that afternoon in Dr. Rosove’s office. Then Krissy understood why he’d asked her brother to come along: Randy was her best chance at a match.

KRISSY: As Randy and I trekked down to the lab, he was cracking jokes and making me laugh. I felt sure we’d be over and done with this in a few months. After that, we met up with Shannon and all went out to dinner thinking everything would be fine.

One week later, the lab reports came back: Randy wasn’t my match.

I literally felt like I couldn’t breathe.

I was already tearing up when I got him on the phone. At first I just heard silence on the other end of the line. When my brother started to speak, I could tell that he was crying too.

KRISSY’S BROTHER, RANDY KOBATA: The doctor had told us that even a full sibling has only a 25 percent chance, but I was really hoping that she and I would be a match. I have always been Krissy’s protector…. I just felt absolute defeat.

KRISSY: All he could do was tell me that it would be OK. But now I was really scared.

The Search for a Donor

After Randy was ruled out as a donor (and parents are never tested because they each provide only half of a child’s genetic identity), Krissy turned to the national Be the Match Registry. Her extended family and friends quickly signed up.

WILLIS NAVARRO, M.D., medical director for transplant medical services at the National Marrow Donor Program/Be the Match Registry: Only about 3 percent of our 9.5 million volunteers—or 285,000—are of mixed race. We don’t break down mixed race further, but I can tell you that within that group, the number of Japanese Caucasian, or even Asian Caucasian, donors is tiny. As this country becomes more diverse and marriages continue to cross racial and ethnic lines, finding a match for people of mixed race will be increasingly daunting. It’s a huge challenge, because while our program has aggressively recruited minority donors through community groups, there really aren’t enough “mixed-race” organizations to help us target those individuals.

KRISSY: I made it my mission to find more mixed-race donors. The August after I was diagnosed, my family and I decided to hold a drive at the Long Beach Obon carnival. Just about every Japanese American kid in Southern California grows up going to these festivals, so it seemed like a good place to start. It was a small turnout compared with the 300 or 400 we got at later events, but I felt strong knowing I was taking a stand against my disease.
Other people—Shannon; my boyfriend, Mark—have helped me stay strong too. I met Mark in 2006 at a client launch party when we worked together at a small ad agency. At first we would just go for drinks, until at one point I asked him out to dinner—I was pretty taken with him. Now we live together, and he’s been incredibly supportive.

KRISSY’S BOYFRIEND, MARK WALKER: She’s the best, completely selfless. That’s the reason I’m so lucky to have Krissy in my life. I guess I don’t really dwell on the possibility of her dying.

KRISSY’S BEST FRIEND, SHANNON MALIK: I honestly have never heard Krissy say “Why me?” or feel sorry for herself. It’s like her positive spirit is contagious. You can’t even think about the what-ifs because there she is, charging forward with her life, not allowing this disease to dictate who she is.

KRISSY: One of my biggest inspirations was Michelle Maykin, whom I met through her website. She was in her twenties, battling a fierce leukemia and in desperate need of a bone marrow transplant. Like me, her mixed Asian background—Vietnamese and Chinese—made it very difficult for her to find a match, but I was blown away because she had registered a staggering 15,000 people in two years at Be the Match. We emailed, and she was so enthusiastic that it was easy to see why so many people were motivated to help her.
Then on the morning of July 25, 2009, I was in beautiful Santa Barbara, looking forward to the happiest day I could imagine because Shannon was getting married. At one point, after I helped her get dressed, I stepped outside to check my messages, and I learned that Michelle had died. I was crushed. I’d known how ill she was, but I believed she’d find a match. She and her family had worked so hard for it. From then on, I knew I had to spread the word so that this kind of disease wouldn’t take any more lives.

“I Can Beat This”

In three and a half long years of holding drives, Krissy has signed up thousands of volunteers, but still no luck. Adding to the heartbreak, her mom, Sandy Kobata, was diagnosed with a degenerative brain disease in 2001 and has become increasingly incapacitated and unable to speak.

KRISSY’S DAD, MARK KOBATA: It’s been so difficult for Krissy to deal with her condition without her mom’s support. And sometimes it’s overwhelming for me, seeing both my wife and daughter suffering and not knowing what the future has in store.

KRISSY: Fortunately, I’m still pretty healthy except for fatigue and bruising—I just graze my desk and get a massive black-and-blue mark. I don’t even tell people I’m sick unless they ask about my MDS bracelet; then I explain I have something like pre-leukemia. I travel on business, exercise, try to eat right and hang out on weekends with Mark, Shannon and my family. And I’m still hopeful: I’ve been told that at least three patients have been given a second chance at life because their match signed up at one of our drives. That helps keep me motivated.

But emotionally, I am a ticking time bomb. Without a transplant, this disease will eventually kill me. Every six months I get my blood counts measured, and if they drop a little, I’m a mess. I constantly wonder, Is this the day that the disease is going to take a turn for the worse? And there are the random thoughts: When I recently found out that Shannon is pregnant, I was like, What if I’m not around when she has her baby? Or I’ll be doing my 401(k) and think, I don’t even know if I’ll get to retire.

DR. ROSOVE: It is a race against time. You never know when MDS can change. It could be years; it could be months. Krissy’s life depends on finding a match.

KRISSY: My biggest wish right now is for anyone reading this—especially those of you who are mixed race—to realize that you could be that match, for me or for someone else. It’s so, so easy: You just take a Q-tip and swab your cheek, and you could literally save a life. [See box, left.] I refuse to give up hope—now or ever. But you are the hope that someone like me clings to.

Habiba Nosheen has written for The New York Times and The Washington Post. Lisa Desai is a video journalist whose stories have aired on BBC and PBS.

37,200 Glamour readers could be Krissy’s cure. Are you one of them?

Roughly 0.31 percent of American women are Asian Caucasian, according to U.S. Census Bureau estimates. That means about 37,200 of Glamour’s 12 million readers have a heritage similar to Krissy’s—and better-than-average odds of being her match. If you’re Japanese Caucasian, the odds are even higher. Go to bethematch.org/glamour to find out about donating, which can be almost as simple as giving blood. Donors of all races are needed—and you could help people with one of 70-plus diseases.